Sociology, dying and AIDS: learning from Hospice Care in South Africa

M.A.In sub-Saharan Africa the importance of understanding the illness and dying experiences of people living with HIV/AIDS (PLWHAs) is underlined by the fact that some 30 million people are already infected with HIV. Yet, there has been precious little research on chronic illness and dying within the sociology of health and illness. This dissertation begins to address this gap by considering the question ‘how does care of AIDS patients inform a sociology of illness and dying?’ It is argued that AIDS related chronic illness and dying are best understood within the AIDS care context. A theoretical model of quality AIDS care (QACM) was constructed, and highlights access, physical and psychosocial aspects of care. This was evaluated in relation to two South African hospices, both located on the Witwatersrand. In addition, a telephonic survey was undertaken in order to situate the two case studies within a national context of hospice-based AIDS-care. Some of the valuable refinements made to the literature QACM include new staff motivators, self-contained funding, additional dietary concerns, more cost-effective treatments, the importance of stigma, patient-patient support and the advent of hospice day-care centres. It was concluded that caregiver and patient needs must be met to ensure quality care provision. Three noteworthy conclusions were drawn. Firstly, the QACM was found to be a sound reflection of hospice AIDS-care reality. Secondly, the case hospices sufficiently subscribed to the required care standards, but improvements are warranted. Thirdly, and most importantly, the study highlights the impact of stigma on the chronic illness and dying experiences of PLWHAs. This study has taken a small step in the right direction by providing some sociological insights into chronic illness and dying, by the application of Northern-centric literature to the developing context of South African hospice AIDS-care. Further investigations may serve to bear these conclusions out, in alternative care settings, in order to further develop the sociology of illness and dying.Prof. J.M. Uys Prof. P. Alexander